Miracles...

Wednesday, September 21, 2011

I really need to catch up. My apologies to those of you wondering what happened to us. No worries...we are fine. I just need to find a dedicated time to write and stick with it. I keep on telling Stephen that he could always contribute, but he hasn't taken me seriously. There are some things that I'm not sure he wants to share, so it would be nice to have him pipe up every now and then. We are as busy as ever with therapy. He is getting stronger and we can see progress even if it is seemingly small. We have one therapist who works with him at the pool and the neuro institute. She really pushes him and has some aggressive goals. He is working on sitting balance and leaning over while supporting himself with his arm to the side. This requires strong triceps, shoulders, trunk, and biceps. His left shoulder is still subblexed and we keep it taped with kinesio tape and use the estim too. We are praying for that shoulder to get stronger so he can do more with the left side. We should have a standing frame at home this week, so that will be great to use at night after dinner.

We had a nice visit from elder Choi of the quorum of the seventy. He and his wife were visiting our stake conference and wanted to come over to visit our family. It was a busy Saturday morning, but we crammed in a cross country race and were all ready for our VIP guest by 10:30, a very untypical Saturday morning. They were very kind and I think it made quite an impression on the younger kids. We had a nice visit and he was able to give Stephen a priesthood blessing.

In other news, Stephen has been studying seriously for his world history final, and just took it on Monday. His professor arranged to have the local institute teacher be the proctor, which was very convenient. Stephen dictated his answers and the teacher circled them. Then he dictated his essay response which we typed and he dictated the edits as he went. Yeah! It is so great to get that behind us. Now he is working on his computer science final, the last one! He is going to try out the voice recognition software in windows 7. Plus he's discovered Splashtop, a cool app that he can use to access his laptop from the iPad. The difficulty is typing. With his stylus splint he can type on the iPad slowly, but a lot better than the computer. So, we are trying to figure out the best system to use for his fInal, which is writing a java program. I am more grateful than ever for his sharp mind. I know he will be able to figure it out.

We did get some interesting test results back this week from some blood work to check on his blood clot. Apparently, he has two gene mutations that make him more susceptible to blood clots. One can be maintained with folic acid. The other one is Factor V and means he will be on blood thinners indefinitely. We plan on an ultrasound before Christmas to check on the blood clot. Now we need to have our blood checked too...even the kids. Ugh! It's good to know why he got a blood clot so quickly and severely. It wasn't just the immobility alone, but a combination of that and bad genes. There are also two proteins they checked for, but when you are on coumadin the test results are inconclusive. We will need to go off the coumadin and switch over to lovanox shots in order to get his wisdom teeth pulled. That will happen sometime soon...aren't we excited?!

Tuesday, September 13, 2011

I guess if I get pestered enough I'll remember to get on the blog. Stephen is doing well. Our schedule is a little out of whack, with OT still at St. Joes and PT at the Neuro Institute. Plus, aquatics at 360. Nothing is at the same time on the same day, at least for this month. I feel like I'm always in a rush to get to an appointment on time, and that's asking a lot from me. I'm not the most punctual person, but I'm giving it my best effort. I am still getting used to the extra process to get out the door; lower the ramp on the van, open the door for Stephen, gather the supplies, snacks, ipad, hook the wheelchair in on all four corners, raise the ramp....and the reverse when we get there. It adds an extra 10 minutes. I'm realizing that there really aren't enough handicapped spots, especially with extra space on the side for the ramp. Stephen really doesn't go to a large variety of places anyway, just doctors' offices, therapy, church, the movies, maybe someplace to eat. He would rather avoid errands and shopping, unless absolutely necessary. That's nothing new, but now I don't force him to come along like I used to. When the weather cools off, we will have more opportunities to go outdoors on walks. I guess he is making up for all the time he didn't spend at home during high school. On Labor Day we felt the pressure of doing something fun, just so we could say we got out of the house. A long car trip out of the valley isn't really possible now with only 5 seats in the van. It is too hot for Stephen to be outside physically. Things we would of done before like bowling or ice-skating aren't choices now. So, we went to the aquarium at Arizona Mills. It was nice, but small...which was fine. It was a chance just to get out and do something normal. When I get overwhelmed thinking about everything at once (I can't let myself do that often) this is one of the things I worry about. I'm grateful for Stephen's keen mind, and that he can keep himself busy for long times by reading and studying, although I worry about him missing out on everything he did before.

Here's another quote that helps me. "No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God...and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father and Mother in heaven." That was by Orson F. Whitney, quoted by Pres. Kimball in "Faith preceded the Miracle".

Saturday, September 3, 2011

Well, last Monday our physical therapist at St. Joe's let us know we were going to be discharged at the end of the week, at least from physical therapy. It's a matter of "maintenance" vs. "improvement" in the eyes of insurance, and I guess using the standing frame and the e-stim cycle are just maintenance. Occupational therapy has a longer list of goals, like grooming, eating, using a remote, getting a drink. OT also has more measurable improvements of arm strength, because his arms and shoulders are definately getting stronger, but they even cut us down to two days a week. Anyway, we decided to check out another rehab in Tempe on the way home that day, that specializes in neuro rehab. They had the equipment and more importantly, the attitude of improvement. After talking with them for a few minutes they suggested lots of "improvement goals" that would continue justifying physical therapy, like sitting independently, using a manual wheelchair, etc. So, we will go for an evaluation this week, and probably switch over to this place, The Neuro Institute. Stephen is optimistic about it, and we are hopeful it will be a good match.

Stephen has been consistently studying and getting ready to take his History final. It will be good to get that out of the way. It is keeping him occupied. When those are out of the way, we will have to decide about moving forward with independent study classes while we continue with therapy. There are too many unknowns to make any decisions too far in advance. Of course, we continue to wait with hope and faith for Stephen to improve. Any improvements will mean more independence and strength to be able to go back to school. Sometimes I find myself praying for just small improvements, in the triceps, wrists and hands. Any of those things would be a miracle to us! For those of you fasting tomorrow on Fast Sunday, please consider that in your prayers.

We know that one of the purposes of our life on earth is to get a physical body. Another purpose is to be tested to see if we will choose to be faithful in trials and temptations. Stephen has always been an excellent test-taker. He was always the best student, starting in kindergarten. Taking tests was just intuitive without too much effort. I remember when he took the ACT the first time and did really well, but was unsatisfied with one portion. So, he took it again and did well on that section, but worse in a different section. So, the third time he took it was the charm. He did really well on all the sections...almost perfectly. Well, this is a test beyond any test in school. U know we all have our trials in life, some might be a series of quizzes, some might be multiple-choices. This is more like a big essay...or defending a thesis. It was definately a "pop quiz" too. Well, I guess we knew that we would be tested when we came to earth, so maybe we had some warning. Anyhow, we wanted to come to earth even though we knew it could be hard. I don't think we knew it could be this hard, but hopefully we can pass this test too.